Tuesday, July 29, 2008

Well of course the insurance denied the request for the transfer, so I talked to the doctor today. She wants to try and wean him off the oxygen, but she said we would have it to travel home with if it is needed. She also said we could have a monitor as well. YAY! That will make me feel so much better! At least I have the chance of a little sleep on the trip home. We should be discharged sometime next week, if nothing major happens. I'm praying it will be smooth sailing from here on out. Please everyone pray for us too! I'm a firm believer that prayer works. I look at Elijah now and see how far he has come. He is a living testimony to the power of God! He is a living breathing miracle! I know that we still have a long road ahead of us but just the fact that he is eating like a big boy now, and gaining weight is a miracle! Unless you have seen it yourselves you can't imagine how fragile and tiny this baby was. The baby dolls I played with as a child were huge compared to this little guy. He was so small we couldn't even touch him at first. The most gentle of touches hurt him. You could see through his skin it was so thin and fragile. He is so sweet! I will always miss his brothers, but I am so thankful to have him! I have three boy's now (and 2 in heaven) and that will be all for me! But, I know I am truly blessed by God to have my boy's, and I am thankful!

Friday, July 25, 2008

Elijah's big brothers

Here are pictures of big brothers, Dillan and Alex!

Could we actually go home soon?????

Hi everyone. Just a quick update. Elijah is doing great, he is eating good now. They are talking discharge. We are still not sure if they are going to discharge him to Johnson City Medical Center or with us. The Neonatologist is going to do a peer to peer with the medical director of the insurance company on Monday. So everyone pray real hard that we get the transfer. It would be so much easier and alot quicker. The baby will be going home on oxygen so it will be safer as well. As everyone knows my whole family is in Virginia, so I'm thinking about going ahead and making flight arrangements for Brian to fly down here so he'll be able to ride back home with me. I'd rather be on the safe side and have someone here in case they decide to discharge. Elijah's due date is fast approaching, the babies were not due until August 1st. Can you believe they were born in April, four months early! Elijah is such a fighter! He is my little tough guy!

Wednesday, July 23, 2008

Moving right along....

Hello everyone. Well first I'll give you an update on Elijah. He is doing well, he is now eating 40 mls every three hours from a bottle. That is a big deal for him, especially with his bowell issues. He is tolerating the feeds great so far! One concern right now is that he is retaining alot of fluid. He is so puffy. The doctors think it is from the (HAL) the fluids that give him nutrients, he has been on it pretty much since birth. It can cause problems with the liver, which should resolve when he goes off of it and the doctor said he may be off of that tommorrow! They just have to make sure that the fluids don't effect his lungs so they are keeping a close eye on that and giving him meds to decrease the fluids. That is why we can't seem to get him weaned off the oxygen.
About the going home situation, it is sort of at a standstill (but I'm still trusting God)! The doctor told me he wanted Elijah to go home on a monitor and maybe even oxygen, the problem with that is the monitor companys here don't want their stuff going out of state! So the doctors and social workers have told me to appeal the insurnace companies decision not to transfer Elijah, the doctors have wrote a new order for him to be transferred to JCMC as opposed to me traveling 12 hours with him. Then he could be discharged from JCMC as soon as possible. So everyone please pray for us to hear something from the insurance very soon about this. Last time it took 3 weeks for them to just tell us no. I don't want to have to leave my baby here but am going to have to get home soon. School starts back in August and I miss Alex and Dillan so much. My mom is sick again(pray for her) and Brian is struggling to try and find work! I know God will see us through this!
Even when the baby comes home it will be a long road for us, we wont know if he has any lasting effects of prematurity for months or even years. But, whatever happens, Elijah is a gift, he is so sweet and precious and I know I have been truly blessed by God, just by the fact that he let us keep Elijah. I miss his two brothers and what might have been, but it's like my mom told me, even if I live to be 90 and my kids are living their own lives, I'll always have those precious babies waiting for me in heaven! What a blessing, that God found me worthy to love those two little boy's even for such a short time here on earth, but for a eternity in Heaven!

Sunday, July 20, 2008

Hello everyone! Well time seems like it is moving so slow now! Elijah is doing well and eating, and he is tolerating his feeds. He is retaining fluid though, but his urine output is great. I hope nothing is wrong. I have decided that I am going to push really hard for a monitor and maybe even oxygen for the trip home. I can't believe these people would actually send him out of the hospital without this equipment. He is still having bradycardia episodes where he drops his heart rate and stops breathing. From everything I read and hear this may not resolve for another month or so. I'm sure the insurance is pushing for discharge since he has had his surgery, not that I want him to stay in the hospital, I just refuse to travel 12 hours (we'll drive 6 stay overnight and then drive 6 more) without the equipment. He had a episode last night, he tends to do it in his sleep. After all we have been through I refuse to put my baby in harms way due to the ignorance of the hospital staff and insurance company. When it all boils down to it, it is all about the money, I have learned that much from this experience!

Friday, July 18, 2008

Another NICU update

Hello everyone. Just another day here at the Tampa Ronald Mcdonald house. It is another stormy day, and so hot! Well the nurse case manager called this morning to get info about The pediatrician that we'll be following up with for Elijah, she also said that she will be making some other appointments for specialists. She informed us that because we live out of state that she will most likely not be able to send us home with equipment, this upsets me a little because we are looking at a 12 hour trip home with a sick baby! If the insurance would have approved the transfer then we wouldn't have these worries right now. I'm going to send them a nice little letter. I have put a call in to my pediatrician to ask her opinion on travel with the baby.

Elijah is now eating 10 mls from a bottle, so far so good! God is great! I'm still waiting on them to move him to the next row, where most of the bigger babies go. I'm a little nervous with his open crib, he is so close to ther other babies. It seems like every time I go in visitors for the other babies are practically right over Elijah, that is all I need is for him to get sick now! I'm going to bring that up to the doctors this afternoon. Well It is almost time to go back and feed the little guy, his latest weight is 6lbs 9.5 oz!!

Thursday, July 17, 2008

NICU notes....

Elijah is doing so good. We may even get to come home in a couple of weeks as long as everything continues to go well! He has recovered nicely from surgery and is starting to eat now. He is able to take 5 mls from a bottle! He has come so far from 1lb 80z, he now weighs 6lbs 8 oz! I hope and pray he continues to do well so that I can go back home. I miss the mountains and it is hard to be 12 hours away from everyone I know and love. But, I am thankful to God for bringing Elijah so far. The NEC could have killed him. That is what took his brother Lucas. I find that when I finally let go, and put it all in God's hands, that's when things seem to start going better! I'm so thankful to have my little guy, and his big brothers! I know God will continue to bless our family!